The daughter of a dementia sufferer on coping with constant loss ‘It tears you apart’

By Abigail Malbon| 1 year ago

Dealing with the heartbreaking reality of a parent with dementia.

Becky Searles is a self-confessed planner. “I’m one of these people that...I’m a list-ticker. I get things done, my day is very managed,” she admits.
So when her father was diagnosed with dementia, all control was suddenly lost. The man she knew so well began to fade in front of her, to forget the things he once knew so well, and there was nothing she could do about it, no way to control the situation.
“I had a few things happen in 2017, but that was just a doozy,” she told 9Honey. “I knew dad had dementia but it started to take a real turn, and what was happening was something I couldn’t control.”
Becky, from Newcastle, had known it was coming. The signs arrived a few years before - memory loss, confusion...he even struggled to recognise his own wife. His daughter became the person he knew best, but when his behaviour began to get more erratic, to the point where he nearly set fire to his house, the family knew it was time to act.

Becky with her father at his 70th birthday party. Image: Supplied.

“At the end of 2016 it was a period of a few months where we went to a specialist and he said ‘you’ve got about six months before he’s going to go into care’. It was really, really fast,” she explained.

When it came to putting her father into a home, though, the 45-year-old hadn’t expected to deal with the intense guilt. “You don’t think about that step being that hard - not for someone like me,” she explained to 9Honey. “I just went ‘Okay, well I can deal with this, I’ll put him into care and it’ll be great because someone will be looking after him and I’ll be able to take him out.’ It doesn’t work like that.
“I still live with it everyday. Every time I think of him and I see his face. I almost get anxiety just driving to the nursing home because I know what I’m going to feel when I get there. You just feel so bad that you are living your life and he is there. There’s so much guilt.

"It’s not a life, it’s horrible.”

Image: Supplied
Becky is one of millions in the country affected in some way by dementia. The cruel disease, which alters thinking, behaviour and the ability to perform everyday tasks,is currently directly affecting 413,106 Australians*.

Image: Supplied
One of the most difficult things to deal with as an individual, Becky finds, is trying to help the people you love understand the situation. The 45-year-old explained that her children haven’t had the grandparent relationship she always hoped they would have.

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“I think my kids don’t understand enough,” she admitted. “They don’t know what they’re missing out on. Grandparents are so special. I always told my parents that their grandkids would be close to them, and I feel that this disease has robbed them of that.
“I’ve never taken them to the home, because it frightens me sometimes, and I don’t want my kids to have that memory of my dad."
And family members also struggle to accept the reality. “My brother tends not to go there because he just can’t fathom what’s happened,” she explained. “Whereas my mum and I feel a responsibility to go and check on him and make sure he’s alright.”

Image: Supplied
For Becky, the cruelest aspect of the disease is the slow decline. “A nurse said to me ‘It’s a long goodbye’ and I just thought ‘nah, surely it can’t be that long?’ This has been the longest process ever, and we’re only at the beginning.
“It tears you apart all the time.”
And, like others who have been through a dementia battle, Becky had to accept the loss of control. “I struggled with not being able to solve the problem. I learned about myself a lot, I learned that I can’t always fix things.”

Becky with her two children. Image: Supplied

For better or worse, Becky says she’s never far away from someone going through the same things.
“The more you talk about it to people, they just open up because they’ve experienced something in their lives - whether it was a nan or whether it was a brother or sister - someone is always affected, I think because we’re keeping people alive a lot longer these days.
“Our healthcare system has improved so much over the years that we are dealing with these old-age illnesses.”
For Becky, her escape was her business - Family Garden Life, a blog directory for mums who want to bring their family closer to nature but aren’t sure where to start.
“I’ve always liked gardening, and I suppose as you get older you make more decisions with work - if you get the opportunity to - to do something that you like,” she told us. “And that’s why I started my business, because of what it gives to me being in the garden, and just being able to rebalance and get a bit of clarity in my life.”
“If I could give something to someone who is going through it, it would be find a space where you can think things through, where you can make sense of it.
“To sort through what’s going on in your mind.”If you or someone you know is suffering with a dementia diagnosis, visit dementia.org.au or call1800 100 500.